Hi Colin, Debbie, Meerkat, Andrea, Annabel,

I'm finally out of hospital after ten days. My operation went well and my recovery has been quick. Apparently I'm "superhuman" accordingly my doctors as I have recovered a bit too quickly!!  Thy can't believe it!

The operation was 8 and a half hours and as planned, 50% of my tongue was removed and replaced using tissues/muscle and an artery from my left arm and a skin graft from my tummy. They also removed my lymph nodes on one side of my neck and removed two wisdom teeth! I was under anaesthetic at 10am on the Thursday morning then in an induced coma in intensive care until the saturday morning. I was then moved to the ward on the Sunday afternoon,

My tongue looks very neat. It's still very swollen on the one side, but the swelling has reduced a lot already. It's odd because part of my tongue is white as in the colour of my arm skin but the old part of the tongue is the usual pinky/red colour! The switches are dissolvable and should come out over the next couple of months. I was told to expect to not be able to talk as soon as I was awake but I was chatting away! My speech was fairly clear too so that pleased me, I didn't even need to use the whiteboard I had bought to communicate! My tummy wound has been fine until now - the dressing was removed yesterday before I left the hospital and it's become itchy and I'm aware of it all of the time whereas before I was not. My neck wound has been fine, very neat and tidy but I can not turn my head too much or too quickly and it has been tighter over the last 24 hours, so I'm going to ask the nurse to look at them today when I'm back at the hospital for an appointment to have the stitches removed from my arm. My arm is by far the worst wound, there is a large area on the inside of my wrist which will be scarred and then a long line up towards the inside if my elbow where the artery was. Luckily I'm not vain and I'm not worried about scars! This wound has been painful at times and it's still heavily dressed with a splint so I can't move it or use my left arm at the moment. I think the removal of the tooth wisdom teeth was probably the most painful part though! This caused a lot of swelling and bruising, I look as though I have been beaten up!

I've never had an operation before so I was very surprised at how incapacitated I was following the operation. I was not allowed out of bed or to sit up at all whilst in intensive care but the day after I got to the ward I was encouraged to move around but I couldn't do much at all. I needed help to sit up, stand, use the loo. My sight was a bit blurred and I couldn't even hold a book or text on my phone. I was very dizzy on my feet for a few days and I didn't expect that at all so that all threw me a little but by 6 or 7 days post op I became very independent. I had a problem with phlegm and saliva for a coupe of days in which I seemed t be producing lots if it but that has settled down now and 6 days following the operation I was allowed to try very small sips of water then on day 7 I was able to try soup. So that's my diet at the moment - soup, ice cream, custard, yoghurt and the nutrition drinks from the hospital. 4 days on and it's already getting tedious!

Overall, it's been ok. My stay in hospital was as comfortable as it could be and I salute all of the doctors and nurses who have looked after me, they've have done a fantastic job and I couldn't have asked for more. I've been sent home with tonnes of medications and instructions but I have felt totally at ease the whole time as I well well informed about everything.

It's so nice to be home and not be poked and prodded every couple of hours for blood pressure checks, temperature etc! I've missed my little girl terribly and everything all still seems a bit surreal, I still can't quite believe what I've gone through and that it happened to me. I now have to wait a week to find out if I will be needing radiotherapy but I'm optimistic that I won't. My surgeon is confident that all of the cancer was removed from my tongue during the operation but they can never be too sure about lymph nodes. It's been an experience but as always, you people were on my ind the whole time. I'm anticipated a long recovery time at home (approx 4 months) which I will certainly make the most of and do as I'm told and rest.

Speak soon,

Nicola

Nicola,

I have been wondering how you are doing when I found your post. It is wonderful that you have and are doing so well. I am delighted to hear you are "superhuman", and home already.

Well done for facing what you had to go through, and I am sure your positive attitude helped overall.

Look forward to chatting over the next few weeks of your recovery.

best wishes

Annabel.

Hi Nicola,

Phew! That's really good news. It's such a shame that you had to go through all that worry though. These ups and downs do seem to be par for the course don't they? Your news has really cheered me up.

My trip to the dentist was interesting - apparently I've got excess 'cementum' suddenly growing out of the root of a wisdom tooth. It can be caused by trauma apparently. He broke a bit off and gave it to me in a plastic bag in order that I can give it to the oncologist next  week. It looks like a small piece of bone. He says that the oncologist should refer me to the hospital dentist to get the issue dealt with. Strange but true!

Next stop is the bone marrow test on Thursday. Life is one big adventure.

I hope that your meal went well this evening. I've found that anything with tomato in makes my tongue sore - I mention it just in case the same is true for you.

Take care.

Simon xx

Hi Simon,

I hope your biopsy goes well/has gone well today. I googled it to have a read of what it involves, hopefully it sounds worse than it actually is. I read that there are two types of biopsy, aspiration or trephine, which did you have? I hope it wasn't too uncomfortable. I know the biopsy procedure is a small thing compared to all you've already been through but it's still something else to deal with isn't it? I really hope the results are what we are all hoping for, but I'm sure you're going to be anxious over the coming week now. I wish these things didn't take so long!

That was surprising news about your tooth! I read a story on line about a man named Paul who had very similar treatment to us for tongue cancer and it sounds like he had a similar issue with his teeth where some broke away. I would say I will look out for this too but I don't have any teeth left on the "bad" side of my mouth as they were all extracted. Maybe it was a good thing after all! Incase you're interested, if you google "Paul's story tongue cancer" you should easily find it on the oral cancer foundation page. He also talks about some itchy bumps following treatment. His story was one of the first things I read when I first found out about my own tongue cancer.

Thanks for your previous message. It is a shame I had to worry so much and I'm still a little nervous about next weeks appointment, but less anxious than I was. I hope the recovery of today's procedure isn't too bad. Speak soon,

Nicola xx

Hi Nicola,

The bone marrow test wasn't too bad. A bit painful afterwards but no worse than a trip to the dentist. I had both tests done at the same time. They took some samples of bone marrow which they placed on 5 or 6 glass slides and also removed a small a piece of bone. Apparently only some of the tests will be ready for my appointment next Wednesday as the bone sample is slowly dissolved in fluid over a period of time.

Thanks for highlighting 'Pauls Story'. I had stumbled upon that some time ago but it was good to go back a remind myself of his experiences. It is encouraging that he seemed to experience some recovery of his saliva glands. I had forgotten about the itchy bumps he experienced, maybe that's what I have been having. I hope so because they seem less sinister than some of the other possibilities.

Anyway, you and I are playing the waiting game now. My next appointments are next Wednesday for the bone marrow results and then Thursday for my monthly oncologist check up.

I hope that you have a good weekend and please try not to worry about things. I stumbled across a YouTube video that discussed head and neck cancer (search for 'head and neck cancer' on the YouTube site - I can't post the link here) - it highlighted the fact that cure rates are very high and recurrence rates are low.

Take care, Nicola.

Simon xx 

Hi Nicola

I was so pleased to read this post - what a huge relief that news must have been.  It's such a pity you had to worry yourself sick all weekend though.

I got a good report on Wednesday.  My consultant seemed very pleased with my treatment and how my skin and throat are healing.  She said the inside of my mouth is looking far better than average at 4 weeks post-treatment, however funnily enough it's only the past couple of days that my throat and tongue have become really sore and my attempts at eating have taken a backward step again.  All very frustrating but am thankful all is progressing well and just trying to be patient.

Best wishes for your next check-up and I hope you enjoyed your Mum's casserole.

Love Irene x

Oh dear Simon, whatever next?!  You are right, you couldn't make it up!  However sending positive vibes through the ether for the next stages.  I've just posted a reply to Nicola with a wee update following my check-up on Wednesday.  Happy Bunny

Hi Irene,

Excellent news about your check up - I'm really pleased. Another step in the right direction.

Take care.

Simon xx

Good news today! I'm officially in remission!

I had a check up today and my consultant decided not to do the ultrasound of my tongue. Him and the surgeon had another discussion about my scan and are happy that there is nothing to be concerned about. I will however be having an ultrasound of my neck at my next check up in one months time. This is purely for a baseline so that they have something to compare against in the future should they need to.

Needless to say today has been a day of celebrations! I had my first alcoholic drink since before the operation last September - a glass of champagne! I could actually taste it too. I'm going to attempt a pancake later as it's Shrove Tuesday!

It's been seven months of hell and today marks the end. It's been an emotional day but a day I'll never forget. Thank you to all of you for your amazing support and understanding throughout, you really did all help me through my darkest days.

Simon, I wish you luck for tomorrow's biopsy result, but I'm feeling positive for you. Please let us know how you get on.

Much love,

Nicola xx

That is such good news Nicola, congratulations and well done. We said you'd get there and you have,

hugs

Annabel. xx

Hi Nicola,

Thanks alot for the information. I am very happy for your remission! I hope my mom can go through all these asap. Please take care of yourself.

Ping

Hi Nicola,

Absolutely brilliant news. Well done. I'm well chuffed.

Simon xx

Hi Nicola,

Absolutely brilliant news. Well done. I'm well chuffed.

Simon xx